Yes, Alex tried it. there are a batch of muffins still in the freezer. In our case we couldn't find a medium that Alex could actually eat as he continues to be unable to manage solids to any great extent. The side effect I hated was the loss of motivation which just made his lack of energy and fatigue worse. And the paranoia that came after was no picnic either. These effects only bothered me though, not Alex.

Weight loss was so severe with Alex, he lost some of his muscle as well as all of his fat and it is the loss of muscle which has added to his fatigue, energy and strength issues and is hardest to get back. This continues to be the ongoing battle 12 months out from treatment. He is on a regular diet of Ensure Plus liquid feeds which takes pressure off actually eating so that anything solid taken on board becomes a celebration rather than a battle.

I eventually gave up on the oncologists who were uninterested in his swallowing difficulties and who thought instructions to "try harder" were legitimate. They seemed unable to grasp the concept that fear of choking, no appetite, taste disturbances and nausea after 3 mouthfuls made "try harder" an ignorant and offensive remark. I ended up writing them a letter to try to explain how their solution was unhelpful, and worse, destructive as it made Alex feel like a failure.

So I took Alex to a friend of mine (Infectious Diseases physician who works with HIV patients) who was prepared to trial anabolic steroids in small doses. This required fortnightly visits into the city for injections into the butt which were quite painful. Alex persists with these injections and whilst his weight gain has been modest, it has certainly done a lot for his general feeling of wellness. The injections were good for approximately 2 kilos (4.4 pounds) which he lost as soon as he went off the injections due to a supply problem. As soon as he went back on the injections he regained the 2 kilos. This is not a treatment that I would recommend for the faint-hearted however, as a non-endocrinologist could well reject this option out of hand. I have experience with this type of treatment and was unfazed when the oncologist tore strips off me for even suggesting such a thing. I was also in a position to cite the research to shut him up and have the backing and reassurance from my friend.

The other thing we tried was small doses of antidepressants which also helped. Alex is now on full dose antidepressants for depression and whilst he continues to be underweight, he is now looking at my plate with genuine envy which is a good thing because it suggests his appetite is back, although his ability to chew and swallow is still a work in progress. I now feel slightly guilty eating in front of him but also know if he participates in mealtimes, even one mouthful is a step forward. Alex worries about the cost of his uneaten meals whilst we are out and sometimes chooses the cheapest on the menu instead of the most appropriate thing. I keep an eye on this and redirect if I think there is something else that is either easier to eat or higher in calorie value. Unfortunately, after agreeing that this thing would be easier and better than that thing, he orders the thing we agreed was not the best thing. grrr

One thing I would ask you to consider would be your own behaviour. Like you, I tried everything to get Alex to eat. Suggestions and discussions about what he could eat or might feel like, threats of deteriorating health, comments like you need to push through this, I know it's difficult but just one more mouthful etc etc. I eventually stopped because it made no difference but caused tension as soon as the food came out (my meal not his). It got to the point that Alex would get irritable and combatative before I opened my mouth. I now make no comment when he refuses but if he eats anything I ask him how it was, what was good about it, what might be better in the future etc and support even the one mouthful he might have had. Now when he leaves whatever is in front of him after telling me what was good and what was not working, it is a lot less stressful because he has no fear I am going to harangue him for only eating one or two mouthfuls. Yesterday it was fruit toast. As soon as he ordered it I thought "you have got to be kidding!" but kept my "lets have a nice cup of coffee" face on and sure enough after 2 mouthfuls he gave up saying it was too dry, crumbled in his mouth and he couldn't get all the bits in one place to swallow easily. Ah well maybe the banana bread with lots of butter would have been more moist, and clumped together better to make it easier to swallow.

I know I haven't exactly answered your question but hope my story will help you to consider your options.

Karen